Feeding tube PART TWO Ng tube adventures

So, a few things I left out of the last post.

I want to emphasize that going to a feeding tube was the

LAST CHOICE.

We, along with her doctors, tried everything first.

In order for a doctor (or at least the ones we met with) to even suggest putting a feeding tube in,

things have to have gotten to the point where it was

life or death.

Without the feeding tube Lily would have died. 

Without a doubt.

I also want to point out that 

IN NO WAY was the feeding tube

"the lazy way out"

I have heard many times 

it been said that tube feeding is for 

"Lazy Parents"

That IS NOT THE CASE!

There is nothing easy about

tube feeding.

Except for being able to force a burp anytime at all :)

So on a different note...

when we first got the NG tube 

They put her on an elemental formula 

called Elecare.

Its super expensive 

Like 40 bucks a can!
but because she had a feeding tube

our insurance covers it. :)

They also put us on a continuous night feed.

this means for 10 hours every night she

is hooked up to her pump

and is fed.

It goes super slow

(about 2 ounces an hour)

but since she is sleeping

most of it stayed down and so as a result

she started gaining weight and

started progressing again!

So, the first time I put an NG tube in her 

I cried and cried.

I felt so mean, and it looked scary to me.

No one likes having a 

BIG YELLOW TUBE

taped to their baby's face

broadcasting that 

"something was wrong".

But, Lily was very good at pulling it out

so I became very good at putting it back in.

Plus it literally saved her life

and I LOVE it for that!

  I definitely have a love/hate relationship with her feeding tubes.

I was surprised at the amount of supplies I had to have with me at all times though...

 

An Ng tube, sterile water,8ml  med syringe, and a 60cc "bolus syringe"

 

A stethoscope to "check placement" and make sure the tube is in her

stomach and NOT her lungs...

 

ky jelly for the tip of the ng tube to make it go down her nose easier,

Hypafix! My most favorite med tape in the world!!

plus surgical scissors to cut it with,

also paper tape to tape the end of the tube closed.

we later switched to waterproof HY tape but I don't have a pic of that...

Duoderm! We cut a thick piece of duoderm and put it on her cheek first to protect it

from taking tapes on and off all the time

One piece of duoderm usually lasted about 5-6 days 

even with getting wet!

the smaller piece is tegaderm.

its clear and pliable and super sticky but its one of the things she isn't allergic to and it 

came in handy when I was out of hypafix!

 It is also used on her IV port.

This is her Iv pole. I decorated it to match the "girlishness" of her room

You can see a close up of her feeding pump and bag here

and we would hang her apnea monitor on it while she was  sleeping as well!

 As many "tubie mommies" say 

taping an ng tube is an art more than it is a science

It takes lots of trial and error,

here's our taping progression

 

Day 2 of the ng tube, The hospital did this one and I thought it was a bit overkill...

 

Next I went to the waterproof hy tape, it was super gentle on the skin but it

looked weird to me because of the color

and it came of WAY to easily

Next, came the tegaderm trials,

It stayed on MUCH better than the hy tape

but it stayed on too well

and took skin with it when it was time to take it off :(

 ENTER HYPAFIX!!!

yeah so at first we taped the WHOLE tube down to her cheek

it helped train her to leave it alone and not pull it out...

 

Which she still did on an almost daily basis...

You can see the "guilty" look in her eyes her cause I caught her

pulling it out...

FINALLY,

we got to the point where we just needed two small squares 

of hypafix

one right next to her nose, and one just next to her ear

 I felt like it "cleared her face up" a bit

This was her last day with an ng tube

So I took a

diaper pic so I could have a pic of her perfectly un-scarred skin.

She was going to have surgery in the morning

 I made her a tubie bear.

she LOVES it still!

To Be Continued...

Next up the reasons we HAD to go to a g tube, and the surgery...